HOSPICE AND PALLIATIVE CARE: DID I WAIT TOO LONG ? · Parkinson's Resource Organization


Category: Newsworthy Notes


The very first hospice patient I ever cared for (about 15 years ago) was a 64-year-old male with advanced cancer. He and his wife lived in Orange County, CA and lived in an upscale neighborhood in a beautiful home on a golf course. He had battled cancer for about two years and had undergone surgery, chemotherapy, and radiation. His cancer had spread throughout his body and was now in his final days of life. His oncologist had exhausted all traditional treatment but his cancer had come back with a vengeance. So he was referred to a clinical trial which was not effective and had caused several intolerable side effects and was therefore discharged from the trial. His wife said that he had suffered from many of the traditional treatments as well but, initially, he wanted to fight the cancer and “beat it”. His oncologist continued to offer other treatments and he reluctantly accepted them despite suffering ill side effects from previous chemotherapeutic medication and radiation.

By the time he was referred to hospice, he was extremely weak, bed-bound, and eating very little. He was dehydrated and having abdominal pain along with severe nausea. The hospice team immediately supplied an electric hospital bed and other equipment to assist with his comfort at home. He and his wife chose to put the bed (and all of the comfort equipment) in the main living room so he could be a part of all activity and not feel cloistered to a bedroom and isolated. Aggressive comfort medications were instituted as agreed upon by the patient (and his wife) which included pain medication, anti-nausea medication, and medication for anxiety. He also continued some of his usual medications including medications for his diabetes of which the hospice team assisted in monitoring his blood sugars as he was at great risk for low blood sugar (hypoglycemia) which could cause very serious side effects.

We even offered and he accepted an antidepressant since he mentioned he felt “down”. During the first 72 hours of his admission to hospice, the entire hospice team had contacted him, including me, to offer him, his wife, his family, and caregivers our support and service. After 24 hours, his symptoms were well controlled and he was comfortable. He passed away five days after being admitted to hospice services. I had visited him a couple of times and during my second visit, his wife asked me “why wasn’t he referred to hospice sooner?” She had remarked that the hospice team was able to make him comfortable as well as offer support to her. She said she could have had him home and enjoy their life together spending time going places and visiting friends and family as opposed to running around to different medical appointments during his last few months. I didn’t realize how important her question was. Now, after being a hospice physician for almost 15 years, that question is still asked by many patients and their families. I think that one of the most common reasons that there is a delay in referral to hospice or palliative care is a poor understanding of what hospice and palliative care actually can do for end stage disease (cancer and non-cancer diseases).

Many people, including some physicians, think that hospice is for people who are close to death. But that is not actually true. Hospice in the USA is a service to assist patients, where they live, who have a disease or condition who most likely will not live more than six months. They can be highly functional and go on trips, go to the movies, go out to dinner and enjoy their lives. It is the time for these individuals, and probably for all of us, to truly “live in the moment”. In hospice, we encourage patients to do what makes them happy, today... not tomorrow... but today. In fact, I often say, as it is often said in our field, hospice is about living, not dying. Some statistics state that the median length of stay in hospice is only three weeks and the average length of stay hasn’t changed much since the mid-1990s. Although more patients are being referred to hospice, many receive the hospice benefit for very short periods of time, such as the patient mentioned above in this article. Earlier this year, I attended the American Academy of Hospice and Palliative Medicine conference in Phoenix, AZ. One session I attended was presented by the oncology group from Massachusetts General Hospital. They conducted a study and found that their patients with advanced cancer who received an early palliative care consult (not admission to hospice, just a consult) found that anxiety and depression of the patient and their family were reduced significantly.  

Other symptoms were suspected to have improved including pain and blood pressure. These patients also accepted an earlier referral to hospice as they had been educated to the true benefits of hospice. In addition, they had already met some of the hospice team members. The oncologist who spoke had mentioned that, historically, oncologists are reluctant to refer to palliative care for consultation believing that their patients will be stolen from them too soon. More importantly, many oncologists reported that they feel as though they have let their patients down and feel guilty that they cannot offer them a cure when the cancer becomes advanced and is no longer responding to treatment. As I noted above, patient’s can be referred to hospice for non-cancer diseases such as Parkinson’s which is a progressive incurable disease. Putting someone through treatment after treatment for Parkinson’s hoping they can “beat it” can often result in significant pain and trauma, not unlike the ill effects seen with patients being treated for advanced cancer with chemotherapy. No matter what the reason is for a delay to a hospice referral, better education of what hospice and palliative care can provide is paramount. Education not just to patients but also to the entire medical community. Only then will many of our loved ones be able to enjoy their latter days in comfort at home with their friends and family foregoing exhausting tests and treatments that may not promote a good quality of life if they so choose but they need to be informed. As Auntie Mame said to Agnes Gooch in the classic movie, “Life is a banquet and most poor suckers are starving to death...live!..live!”.

NEW & RENEWED: Family Hospice Care has been a member of the Wellness Village since July 2015 and has renewed their membership through 2018. To get more information about them, visit Family Hospice Care in The Wellness Village

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Updated: August 16, 2017